I went to Kigali in Rwanda to report on the type of heart disease afflicting Chance and millions of other young people. I was supposed to be a fly on the wall. Before I knew it, I was trying to help.
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From left, Chance Mwunguzi, Innocent Nsabimana and Alexis Nshimiyimana, who became friends as they waited together for heart-valve surgeries at King Faisal Hospital in Kigali, Rwanda.CreditCreditAndrew Renneisen for The New York Times
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At 16, Chance Mwunguzi had been sick for years, and his mother, a teacher, had done everything in her power to get him help, even selling their home to pay for his medical care. Chance had two diseased heart valves and needed surgery to replace them. Without it, he would not survive.
Their country, Rwanda, has no heart surgeons. Chance’s doctors recommended traveling to India for surgery, but the family could not afford it.
I went to Kigali to report on the type of heart disease afflicting Chance and millions of other young people. I was hoping to find progress in treating and preventing it.
When I met Chance and his mother, Alphonsine Mukankundije, they had found their best, and probably their last, hope: Team Heart, a group of medical volunteers from the United States and Canada who fly in to Kigali once a year to perform valve replacement surgery on patients like Chance.
The stunning thing about this deadly heart disease is that it is caused by strep throat, an illness that is little more than a nuisance in the United States and other rich countries, where children with sore throats are routinely tested for strep and cured with antibiotics. But if the infection — caused by streptococcal bacteria — is not treated, it can lead to rheumatic fever and severe damage to the heart valves.
In lower-income countries, where strep often goes undetected, rheumatic heart disease is a huge public health problem, affecting tens of millions of people. This year, about 100 Rwandan patients, desperate for lifesaving surgery, showed up to be screened by Team Heart — which could operate on only 16.
It’s tempting to think that if parents could be taught to seek care whenever their children have sore throats, this problem could be wiped out. But it’s not so simple. In interviews, I found that most patients and their parents had no memory of a sore throat.
I knew rheumatic heart disease was bad, but nothing had prepared me for the sight of so many young people so ill, many in their teens and 20s — some with stunted growth or abdomens bulging with fluid, some nearing the end of their lives.
Chance was among the lucky ones: He was judged a good candidate for surgery.
But a few days after I first met him and his mother, I found them sitting huddled under a tree outside the King Faisal Hospital in Kigali. Chance was a portrait of misery; Alphonsine was holding back tears. Hospital officials had refused to admit Chance unless Alphonsine paid a fee — which she did not have. She had come so far and struggled so hard to save her son’s life, only to have the door slammed in her face.
Should a reporter try to help? Aren’t we supposed to be the fly on the wall, watching events unfold without influencing them? I pulled out my cellphone and called Team Heart. They sent a member to sort out Chance’s admission. Even though the group has been performing surgery at the hospital since 2008, billing issues erupt every year, spawned by hospital bureaucracy and the quirks of health insurance in Rwanda. Later that day, Chance got in.
Full disclosure: I had already spoken up for him once before, when the team evaluating surgical candidates seemed to have forgotten him. Did it make a difference? I have no idea. They might have gone over their notes and remembered him anyway. Or maybe not.
Like the families of many of the other heart surgery patients, Alphonsine lived too far from the hospital to go home, so she joined the group, mostly mothers, who basically camped out on the broad terraces that wrapped around the hospital and linked its two wings.
Her first night was daunting, she told me later. A young man who had been scheduled for surgery suddenly deteriorated, and it became clear that he would not live through the night. At the same time, a young woman, Elina, who had just been admitted — and who has a major part in the story I wrote — began to cough and struggle for breath. But the team was trying to care for the dying patient. A nurse appointed Alphonsine to watch Elina’s oxygen monitor and call for help if the reading fell below a certain level.
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Medical providers from Team Heart, an American nonprofit, check Elina Mukagasigwa during a screening for rheumatic heart disease.CreditAndrew Renneisen for The New York Times
“I could see that I was the oldest in the room,” Alphonsine said. “That gave me much more responsibility.”
She woke another parent to help her watch over Elina. Soon, the oxygen level began to drop.
Alphonsine called for help, and the team came running.
Alphonsine spent the rest of the night and part of the next day trying to comfort the mother of the young man who had died, and helping her plan his funeral.
A few days later, Chance had surgery. Like the other mothers, Alphonsine sat on the terrace, trying to stay calm, eyes glued to the opposite wing of the hospital, waiting to see her son wheeled from the operating room to intensive care.
His surgeon told her the operation had gone well.
“I want to thank you,” she told him. “I will pray that God keeps you alive and gives you continuous knowledge.”
Chance made a good recovery, and was soon up and about, walking the terraces and even kicking a soccer ball.
Alphonsine said she planned to give talks about strep and preventing rheumatic fever to her students, colleagues and members of her church.
“Even if I have nothing, if my son is saved, I feel happy,” she told me. “I dreamed my son would be cured. Now the dream is becoming true.”
I’m not sorry for helping. If Chance had missed out on surgery, it would have been a wrenching story. His recovery made a better one.
But many more patients than the team could handle needed surgery, and the progress I had hoped to find — like the Rwandan government stepping up to pay for these operations and train doctors and nurses to perform them — still seems to be somewhere over the horizon.
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Denise Grady has been a science reporter for The Times since 1998. She wrote “Deadly Invaders,” a book about emerging viruses. @nytDeniseGrady
